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Friday, May 5, 2023 Parkinson's update

Surfed over to check my Science Magazine website. This story led.
Apparently not (yet) paywalled. I wasn't logged in at the time (I'm an AAAS member).
SEVERAL YEARS AGO, Tim Greenamyre, a neuroscientist and physician who directs the Pittsburgh Institute for Neurodegenerative Diseases at the University of Pittsburgh (Pitt), began to notice unsettling symptoms in his own body. He couldn’t smell things. He was constipated. He was shouting and kicking in his sleep. His left arm didn’t swing when he walked.

In July 2021, Greenamyre turned to a neurologist colleague to confirm the diagnosis he already suspected. He had Parkinson’s disease, an illness he has devoted himself to treating and trying to cure. Over the course of his long and productive career, the 67-year-old has not only won the admiration of his patients and clinical colleagues, but also developed a widely used animal model of Parkinson’s and contributed key insights into environmental triggers. That work exposed him to chemicals that induce the disease in rodents, a possible factor in his own illness.

“The irony is obvious,” says Greenamyre, a shy man with a dry sense of humor and a penchant for practical jokes who, to the unpracticed eye, shows few if any signs of the disease. (For now, he says, medication is helping.)

For colleagues, the news has been shocking and heartbreaking. “I was so deeply affected I could not respond right away,” says Laurie Sanders, a neuroscientist who studies Parkinson’s at Duke University School of Medicine and is a former Greenamyre postdoc. “All I really honestly wanted to do was just drive to Pittsburgh and give him a hug.”

Nearly all of Greenamyre’s 200 or so Parkinson’s patients, some of whom he has looked after for more than a decade, will learn of his diagnosis from this article, in which he is reluctantly making his condition public because it’s becoming the subject of rumors. He worries it will distract them. “I want their visits to be focused on them, not on me,” he says.

Compounding the irony, Greenamyre’s diagnosis comes at a time of fresh optimism among Parkinson’s researchers, who believe they might at last be closing in on treatments that could slow or stop the progression of the second most common neurodegenerative disease after Alzheimer’s. Parkinson’s disease afflicts roughly 1 million people in the United States, with nearly 90,000 new cases diagnosed each year. Globally, more than 8.5 million people have the disease, which is the fastest growing neurological disease in the world by one estimate.

The classic motor symptoms of Parkinson’s disease, described in 1817 by English surgeon James Parkinson, result from the degeneration of cells that produce the neurotransmitter dopamine in the substantia nigra, a midbrain area involved in movement control. This causes a variety of symptoms including, most commonly, tremors, muscle stiffness, and trouble with balance and coordination. As the disease advances, people may have difficulty speaking and initiating movement. Later, many develop dementia. Parkinson’s itself doesn’t kill, but its complications, particularly aspiration pneumonia due to difficulty swallowing, often do.

Dopamine, delivered in an oral drug combination of levodopa (L-Dopa) and carbidopa, has been the front-line therapy since it was approved in the U.S. in the 1970s, although it remains unavailable or unaffordable for many globally. The drug improves motor symptoms, but with time it begins to wear off more quickly, and sometimes-intolerable side effects— including involuntary, jerking movements called dyskinesia—frequently develop. Fifty years on, the failure of science to produce a therapy that stops the disease instead of targeting its symptoms has been painful and frustrating for patients and their families…
A fairly long, technical-clinical read. I loved it. It was quite a personal gut punch, though.
I too have Parkinson's.

At 77, I'm 10 years older than Dr. Greenamyre. In general, I'm just grateful to still be alive. My PD is a steadily worsening hassle, but, everyone should have my problems. Me and my 2018 bovine replacement aortic valve just tickin' along ok.

And, Sinemet still
We're lucky to have these people. Doc, I wish you the best.
Like the million other Americans with Parkinson’s, Greenamyre’s patients are all waiting for something beyond dopamine. “It’s still a disease without a cure,” Hannan says. “I keep asking every time I come: ‘Is there something close?’”



What? Cheryl hipped me to an ad in Baltimore Magazine touting "Magnetic Resonance Guided Focused Ultrasound" tx now approved by FDA and being offered by the University of Maryland Medical Center (and elsewhere).

A non-invasive ultrasound treatment for Parkinson's disease that was tested in a pivotal trial led by University of Maryland School of Medicine (UMSOM) researchers is now more broadly available at the University of Maryland Medical Center (UMMC). Recent FDA approval of a device used in the procedure effectively opens up access to focused ultrasound beyond clinical trial participation. 

The device, called Exablate Neuro and manufactured by Insightec, was approved in late 2021 by the U.S. Food and Drug Administration to treat advanced Parkinson's disease on one side of the brain. UMMC is one of only several sites in the Mid-Atlantic region with the capabilities and expertise to perform focused ultrasound for Parkinson's disease and other movement disorders. The procedure requires a multi-disciplinary team, including a neurosurgeon, movement disorder neurologist, and neuroradiologist...

CPT Code 0398T (People gotta get paid.)

I checked into it. Efficacy looks pretty good (though the "n" remains small based on the trials). $15k outa pocket—NO insurors cover it (and we're Kaiser MA anyway). I got the money, but, I'd be pissed were I a non-responder.

More to come.

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